PARENTS / CAREGIVER

Making Sense of it All

Parenting  has its ups and downs when your child (or children) are healthy. But when your child is ill or injured, and if you have other healthy children, parenting becomes a more difficult balancing act.

Making Sense of it All

Parenting  has its ups and downs when your child (or children) are healthy. But when your child is ill or injured, and if you have other healthy children, parenting becomes a more difficult balancing act.

Parenting while in the hospital has its own challenges. You will have your own fears and worries and so will your child and other family members. Remember everyone reacts and copes in different ways. You may feel or express emotions differently from your child or your family members. This may be hard to understand why and can stress your relationships. What can help you parent in and outside the hospital is to understand your child’s reaction, how their age affects their reaction, how to keep to routine, as well as other tips to help your whole family cope.

Parenting while in the hospital has its own challenges. You will have your own fears and worries and so will your child and other family members. Remember everyone reacts and copes in different ways. You may feel or express emotions differently from your child or your family members. This may be hard to understand why and can stress your relationships. What can help you parent in and outside the hospital is to understand your child’s reaction, how their age affects their reaction, how to keep to routine, as well as other tips to help your whole family cope.

Taking Care of Your Entire Family

Leaving the Hospital

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The day your child is discharged from the hospital can be filled with many mixed emotions. You may feel happy, relieved, and excited to have your whole family back at home again, but it’s common to also feel scared, nervous, or not ready to care for your child without the hospital staff. It’s helpful to talk to your son or daughter’s doctor or nurse about what you can expect at home and who to call if you need help.

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Questions to ask before discharge:

  1. What medicines will my child need to take at home?
  2. How often does my child need to take these medicines? For how long?
  3. Is there anything my child isn’t allowed to do? For how long?
  4. Are there foods my child shouldn’t eat? For how long?
  5. What medical care do I have to give my child at home? How often?
  6. What follow-up appointments do I need to make?
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After returning home, everyone in your family will need time to re-adjust. You may find that you will cope with this adjustment differently than your child. It’s common for family members to react and cope in different ways. Remember to be patient with everyone. You might find yourself having the following thoughts, feelings and actions:

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Even though these reactions are common, if they begin to get in the way of your daily life or last more than one month, it might be a sign you need extra help from a professional. You can talk to your doctor, a clergy member, or counselor for help in coping with your child’s illness or injury. As you and your family adjust to life at home, it’s important to get back to a routine and to renew relationships. Getting back to a routine can help your child, family and yourself feel safe, organized, and in control again. While it may be tempting to relax any house rules or routines, it is better to keep them the same.

Tips to Set up a Routine
  1. Keep the same morning routine and breakfast time – this makes starting the day easier.
  2. Set up a family check in routine – this can happen in the morning to help plan the day, or at any time that works for your family.
  3. Don’t forget about playtime! Setting aside a set time for your child and family to have fun is important. Playing your favorite games, reading, drawing, or watching movies are all great ways to have fun!
  4. Just like the morning routine, keep to the same night routine – Have a dinner and bedtime routine to help everyone relax at the end of the day. Dinnertime can be a great way to talk about what happened during the day. Taking a bath or reading a bedtime story can help your child unwind and go sleep easier.
  5. Remember to schedule time for yourself! Set time to check in with yourself each day. Take time to breathe, relax, and think about what is going well in your life at the moment.
Parenting your ill or injured child and siblings
  1. While your children may not be aware of what is going on, they pick up on a lot.
  2. Do not get frustrated when your child regresses.
  3. Continue to parent your children. Keep in mind realistic expectations.
  4. For your other children (siblings), if they feel scared, let them know it is okay to come to you.
  1. Reassure your children that the feelings that they are feeling are normal and help them work through them.
  2. Siblings may feel jealous or hurt because a lot of attention is given to their sibling because they are sick or hurt.  Teach them that they can still have fun by doing family activities such as hospital slumber parties, movies or playing games.
Always remember, no one expects an illness to happen to their child. When it does, it’s a traumatic experience, and it’s common for you and your child to feel upset, scared or worried at first. Hospitals and/or clinics can be strange and scary places for both you and your child. You might not know where to find things or who to ask for help. When your child is in the hospital, it’s normal to feel sad, upset or even guilty the first couple times you see your child in a hospital bed, hooked up to machines or feeling sick. You may feel upset, or even helpless, as your role of caregiver to your child changes over the course of their illness or hospital stay. Keep in mind, you are the expert on your child. You know how best to comfort them and it’s okay to let the hospital staff know what works. Depending on the medical equipment needed, you may not be able to put your child at ease, and it can be helpful to ask the doctors and nurses how you can help your child. You can also work with the nurses to create a home-like setting in the hospital room. Bringing pictures or favorite items, like a toy, book, or pillowcase, can make the room more comforting. Just like bringing in items from home comforts your child, remember whether in the hospital or not, you are a source of strength and a role model for your child. Even though it may be hard at times, answering your son or daughter’s questions, being honest about what is happening, and reassuring them that the hospital staff is doing everything they can to help will put your child’s fears and worries at ease.

Dealing with your child’s time at the hospital or clinic

The hospital environment:

  1. Think about what makes your child comfortable (ex: they do not like hospital pajamas so you may bring some from home).
  2. Keep your child’s toys in organized tubs and bring them to the hospital.
  3. Boundaries are important, it is okay to say no visitors.
  4. Suggest that visitors meet you in the hospital cafeteria instead of the room, if your child is not up to having visitors.
  5. If you have to stay at the hospital, bring food from home.
  6. Depending on their age, include siblings in appointments and hospital stays.  Long hospital stays can be lonely and isolating for many family members.

Specific situations:

  1. When your child has to fast (not eat) for a procedure it is helpful if you fast too.  Have on hand the foods that your child would want, once they are able to eat again. If you do have/want to eat when your child is not able to, leave the room so they do not see you eating.
  2. Be honest with your child, if it will hurt, let them know (ex: procedures).
  3. Consider having a close friend or family member take notes during meetings about your child’s care.

Reaching out for help:

  1. Utilize the hospital staff such as your child’s child life specialist and music therapist, if available. These therapies can be good, even for toddlers.
  2. Seek what external help exists while you are in the hospital (ex: Ronald McDonald House, Ronald McDonald Room, social work department for meal or parking assistance).

Keep track of everything!

  1. Keep a notebook with details of conversations with doctors, medicines, etc.
  2. Write down any questions that you may have for hospital staff.
  3. Keep a notebook for other record keeping-gifts, meals, or services for thank you notes.
Preparing your children to address questions

After the injury or illness your child may be nervous, embarrassed or anxious to go out in public or return to school. Even if your child’s physical appearance may not have changed, he or she may just *feel* different. Talking with your child about scenarios that could happen, and then practicing responses can give them more confidence if they are in those situations.

How do I answer people? Rehearsed Responses

What happened to you?

  1. Discuss with your child what they can say if they want to answer such as “I had to go the hospital because I got hurt. The doctors and nurses helped my body. I’m feeling better now.”
  2. Your child could talk briefly about their illness or injury.
    “I have cancer, and I had to go to the hospital for a while so the doctors could help my body fight it.”
    “I had to have a transplant because my kidneys weren’t working so great. Now I am feeling a little bit better.”
  3. If your child does not want to talk about it at the time they can say that politely and then change the subject or suggest something else to do together.
    “I don’t really want to talk about it right now. Let’s [do something else] “ or
    “Thanks for asking. I don’t feel like talking about it right now. [Then start a conversation about something else.]”

If someone is staring.

Your child’s appearance may have changed due to their illness or injury. It is important to talk about what to do if your child notices someone staring.

  1. People often stare because they are curious. Your child could:
    Smile back.
    Say Hi, this often stops the person who is staring.
    Start a conversation such as “This store is really busy today” or “I really like that the sun is out today”.
    Come up with a witty comeback such as “Haven’t you ever seen a rock star before?”.

If someone is making fun of them, name calling or being rude.

  1. Help your child rehearse things to say INTERNALLY, to him or herself, to feel strong and positive.
  2. Your child could walk away and not address the insult
  3. If it is appropriate or necessary to say something, help your child figure out what works for them. Trading insults or being mean back is not likely to be helpful:

    “I don’t like it when you say that. You wouldn’t like it if people made fun of you.”
    (speaks about the effect on the child on the receiving end)
    “Saying those things is mean.” (describes behavior, not the person)
    Help your child come up with positive responses.
    “I’ve been sick, but I’m feeling pretty good about myself today.”

Remember:
Teach your child to leave the situation if they think they are very uncomfortable or feel they are in danger, and to tell someone immediately that they are being picked on.

Communicating with your child’s school

WHILE YOUR CHILD IS IN THE HOSPITAL OR AT HOME

  1. Speak with your child’s school and keep them informed of your family situation. If you are not sure who at the school to talk with:For elementary school students, start with your child’s classroom teacher, and ask him or her about other school resources such as the school nurse or guidance counselor.
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    For middle and high school students, you might start with the school nurse or guidance counselor assigned to your child. If no nurse or counselor is available at your child’s school, talk with the principal or vice-principal.

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    Your child’s teacher, school nurse or guidance counselor can be all be advocates to ensure your children receive the additional emotional care that they may need.

  2. Speak with your child’s school and inquire about any assignments that they can do while in the hospital or at home. Check also with your child’s healthcare team to see what hospital school supports may exist.  Many children’s hospitals will have services to support schoolwork for kids with longer admissions. Prior to your child’s return to school, set up a meeting with the school to discuss any special arrangements or additional support that may be needed.
  3. Your child may be eager to return to school or nervous to do so after their illness or injury.. Set time aside to prepare your child including talking with them about any feelings they may have.
  4. If you have other children who are in school during this time, make sure to let their teacher(s) or school counselor know about what is happening in the family. Help siblings think through how they want to respond to any questions about their brother or sister (see tips below about Preparing to talk with others about what’s been happening.)
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WHEN YOUR CHILD RETURNS TO SCHOOL

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  1. Maintain open communications with your child’s school.
  2. Help your child identify a specific person to speak with if they have any worries or concerns while at school.  Talk with that person or, if your child is older, help them to talk with that person to ensure that they know of the plan and are available. (Ex: teacher, counselor or coach)
  3. Make a plan of communication with your child’s teachers – work with them to figure out a manageable plan for staying in touch about how your child is adjusting back to school.
  4. Be sensitive to the needs of siblings attending school. (See tips below about managing stress and behavior changes in the classroom, many of which will apply to siblings as well.)
  5. Ask your child’s healthcare team about any school re-entry programs that may be offered to help transition your child back to their classroom.  Your child may have mixed emotions when returning to school and a re-entry program can help ease those fears.
  6. Speak to your contact at the school to discuss any medications your child may be taken and side effects that they may see at school.
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    Preparing to talk with others about what’s been happening:

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    Prepare your child for any questions they may receive from classmates or staff. Help them think through how they want to respond if classmates ask about what happened to them, why they were out of school, whether their illness is something that others can “catch” (i.e. contagious). If your child has had visible changes in their appearance or has activity restrictions, think about how to talk about those things as well.

Understanding Medical Terms

What did they say? When a doctor speaks it may sound like a different language. It is hard to focus or ask questions when you do not understand what they are saying. All those terms, what do they mean? If you find yourself listening to the doctor speak and do understand what they are saying, ask the doctor to stop so you can ask questions or ask to have the information re-explained using different words. You may also want to:

  1. Write down terms that you do not know or ask the doctor to write it down for you so you can look it up later.  A good online medical dictionary can be found at https://medlineplus.gov/mplusdictionary.html.
  2. Did the doctor use letters instead of a word like MRI, CT or EEG?   Ask them what those letters stand for and ask them to explain them further.
  3. If you have a family meeting scheduled you may want to think about having a family member present to take notes. This will allow you to focus on what the doctor says and reflect back on the notes at a later time to see if you have any additional questions.
  4. Ask for other materials or handouts to help you better understand.
  5. Use the teach back method. Listen to what the doctor says then repeat back so you can confirm that you have the information correct.
  6. If needed, ask for a little time to think about everything. Ask for a follow up meeting to discuss any additional questions or make decisions on treatment options.

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